The mission of the Counseling, Education and Community Outreach projects is to promote, maintain, and restore the health of patients with sickle cell disease and individual with hemoglobinopathy traits through quality education and counseling.
The aims are to meet the individual needs of patients and families, health professionals and community audiences and to use quantitative and qualitative methods to evaluate the success of these efforts. The goals of the projects of patients and families are: to provide support to patients with sickle cell disease and their families; to assist them in gaining knowledge and skills that will enable them to better understand and manage the disease; to provide additional advocacy for sickle cell disease research participants; and to provide individuals and couples at-risk with prenatal and pre conceptual counseling about hemoglobinopathies. For health professionals and paraprofessionals, the goal is to elucidate them about sickle cell disease and its management in order to increase their knowledge base and also to improve their attitudes and behaviors in providing care to patients. For the community, the goals are to improve the effectiveness of efforts to expose individuals in the general population to information on hemoglobin traits and disease and to broaden community support for sickle ell disease research and programs through health policy and advocacy. Finally, for all populations served, the goal is to disseminate advanced knowledge about sickle cell disease research and clinical management using educational tools which are linguistically and culturally appropriate. Objectives, methods and activities towards accomplishing these goals are presented. Proven educational and counseling activities will continue and new activities include: developing materials on coping, extended family support, stress management and pain management for patients, families and providers; offering psychoeducational groups for patients and caregivers; and establishing a bioethics committee. All activities are directed at building and strengthening the partnership among clinicians, researchers, patients and families, and the communities of which they are a part.
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